Diabetes self-management education (DSME) for older persons in Western countries: A scoping review

Abstract

Diabetes mellitus is a chronic metabolic health condition affecting millions globally. Diabetes is a growing concern among aging societies, with its prevalence increasing among those aged 65 and above. Enabling disease self-management via relevant education is part of high-quality care to improve health outcomes and minimize complications for individuals living with diabetes. Successful diabetes self-management education (DSME) programs usually require tailoring for the intended audience; however, there is limited literature about the preferences of older persons in Western countries concerning DSME. As such, a broad overview of DSME for older persons was an identified need. To map the available evidence on DSME for persons aged 65 years and older in Western countries, the JBI methodology for conducting and reporting scoping reviews was used. In this scoping review, we considered all studies about DSME for older persons with T1D and T2D in Western countries where lifestyles, risks, prevention, treatment of diabetes, and approaches to self-management and DSME are similar (e.g., North America, Western and Northern Europe and Australasia). Systematic keyword and subject heading searches were conducted in 10 databases (e.g., MEDLINE, JBI EBP) to identify relevant English language papers published from 2000 to 2022. Titles and abstracts were screened to select eligible papers for full-text reading. Full-text screening was done by four independent reviewers to select studies for the final analysis. The review identified 2,397 studies, of which 1,250 full texts were screened for eligibility. Of the final 44 papers included in the review, only one included participants’ understanding of DSME. The education programs differed in their context, design, delivery mode, theoretical underpinnings, and duration. Type of research designs, outcome measures used to determine the effectiveness of DSME, and knowledge gaps were also detailed. Overall, most interventions were effective and improved clinical and behavioural outcomes. Many of the programs led to improvements in clinical outcomes and participants’ quality of life; however, the content needs to be adapted to older persons according to their culture, different degrees of health literacy, preference of education (e.g., individualized or group), preference of setting, degree of frailty and independence, and comorbidities. Few studies included the voices of older persons in the design, implementation, and evaluation of DSME programs. Such experiential knowledge is vital in developing educational programs to ensure alignment with this population’s preferred learning styles, literacy levels, culture, and needs—such an approach could manifest more substantive, sustained results.

Introduction

Diabetes mellitus is a chronic metabolic health condition and has been classified as a long-lasting global epidemic [1, 2]. An estimated 536 million people currently live with diabetes, a number that is expected to increase to 643 million by the year 2030 and 783 million by the year 2045 [1]. Every 5 seconds, someone dies as a result of diabetes and its complications [1]. Type 1 diabetes (T1D) is caused by the autoimmune destruction of β-cells in pancreatic islets as a result of genetic and environmental factors [3]. Type 2 diabetes (T2D) occurs primarily when there is defective insulin secretion by pancreatic β-cells, and normally insulin-sensitive tissues are unable to respond to insulin [4]. Across the globe, ageing societies are facing the challenges of diabetes mellitus and its complications [2], as its prevalence is growing among those 65 years of age and older [5, 6]. In 2019, over 136 million older adults (65–99 years old) were living with diabetes—a number that is expected to increase to 195 million by 2030 and 276 million by 2045 [5]. Older persons with diabetes have a high prevalence of diabetes-related complications and diabetes-associated conditions resulting in multimorbidity, frailty and disability [5, 6]. Diabetes is a public health burden as it increases expenditures for national and social systems [5]; in 2021, the global health expenditure of diabetes was estimated at $ 966 billion USD [1]. Advancements in diabetes care have also increased the life expectancy of older persons with T1D [7, 8]. T1D is a growing but still under-explored concern in older adults [7, 8]. Due to economic development, rapid changes in lifestyles, and an increasingly ageing population, T2D is the most common type of diabetes mellitus in older populations [6, 9, 10].

Despite the growing problem of diabetes, researchers have shown its management in older persons is particularly complicated and far from optimal [11–14]. In older populations, inequities are compounded by additional differences in risk factors, such as multimorbidity, polypharmacy, cognitive decline, disability, frailty, and socioeconomic factors [15–20]. An increasing proportion of older persons with diabetes are living alone in communities, dealing with their condition with minimal or no support [21]. Furthermore, diabetes care involves making daily self-management decisions and performing complex self-care tasks, which require visual, motor, cognitive, and executive skills and problem-solving and coping strategies [22, 23]. Therefore, ongoing diabetes education, support for self-management, and regular monitoring are crucial to reduce the personal and social impacts of diabetes among older persons [9, 10, 24, 25].

Diabetes self-management education (DSME) is critical in the ongoing treatment of people with diabetes and those at risk of developing the disease [9, 11, 14, 17, 20]. DSME involves a variety of behavioural, psychosocial, and psychological interventions and a combination of empowering, didactic, interactive, and collaborative educational methods [9, 17, 18, 26–29]. The content of DSME can be structured [30, 31], person-centred [13, 14, 29], or empowering [9, 10, 17]. There are varied and well-established DSME programs [30–32].

Researchers have demonstrated the value of DSME in improving learning [9, 15, 33], behavioural outcomes [34, 35], and clinical outcomes [35–38]. Systematic reviews have been conducted about the effectiveness of self-management education for: glycemic control [39, 40]; community-dwelling older adults [41]; the use of technology and its effects on diabetes outcomes [42]; people from diverse backgrounds [43]; women [44]; and individuals in low-income settings [45]. However, little is known about the implementation of DSME in adults aged 65 years and older or the range of DSME programs/interventions for this population [46]. Furthermore, in previous DSME studies, people aged 65 years and over are often underrepresented; this is a problematic knowledge gap for the development of evidence-informed guidelines targeted toward this unique population [22, 23]. With the increasing evidence about the importance and variety of diabetes self-management interventions, a comprehensive overview of DSME for adults aged 65 years and older with diabetes is warranted to identify the knowledge and methodological deficits in this area of study [46]. Therefore, the objective of this scoping review was to map the available evidence on DSME for persons aged 65 years and older in Western countries.

Methods

This scoping review was conducted following the JBI methodology framework for scoping reviews [47], and we adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist [47] (S1 Appendix). Our published protocol [46] was registered through Open Science Framework and is available at https://doi.org/10.17605/OSF.IO/W4KCQ. Our overall review question was: What has been reported in the literature about DSME for older persons aged 65 years and older living with T1D and T2D? To address this, seven sub-questions were also detailed. Following the PCC (Population (or participants)/Concept/Context) framework as recommended in the JBI methodology, our population was older persons with T1D and T2D, the concept was DSME for older persons with diabetes, and the context was all Western countries.

Inclusion and exclusion criteria

In this review, we considered studies involving older persons with T1D and T2D. As this work focused on education after a diagnosis of diabetes, studies with participants with prediabetes were excluded. Older persons were defined as those 65 years of age and older. Globally, the number of older persons aged 65 years and over is projected to increase [1]. People aged 65 years and over have been frequently excluded from research (e.g., clinical trials); when included, researchers often do not report analysis by age [48, 49]. Our review was not specific to gender, sex, ethnicity, or frailty [46]. Studies including older persons with and without diabetes were considered when separate analyses for people with and without diabetes were provided [46]. Studies mixing older and younger participants were considered when separate analyses for the older and younger groups were provided [46].

In this scoping review we considered all studies about DSME for older persons with T1D and T2D in Western countries (e.g., North America, Western and Northern Europe and Australasia) where lifestyles, risks, prevention, treatment of diabetes, and approaches to self-management and DSME are similar. Countries included in the review were Australia, Austria, Belgium, Canada, Denmark, France, Finland, Germany, New Zealand, Norway, Sweden, Switzerland, the Republic of Ireland, The Netherlands, the United Kingdom and the United States. DSME refers to the tailored individual skills and information people learn and apply to manage their diabetes. DSME is guided by evidence-based standards [50]. The goal of DSME is to engage and empower people with diabetes to navigate self-management decisions and activities to control their condition and to avoid complications [51]. We considered studies that provided information about DSME for older persons. Approaches to DSME include structured or formal diabetes education, online or electronic delivery programs, behavioural/psychological approaches, theory-based programs, empowering strategies, problem-solving emphasis, and approaches focusing on psychosocial strategies [46].

We considered a wide range of quantitative, qualitative, and mixed-method designs. Experimental and quasi-experimental study designs were included (e.g., randomized-controlled trials [RCTs], and nonrandomized pre-and post-test designs), in addition to analytical observational studies, including prospective and retrospective cohort studies, population-based studies, and analytical cross-sectional studies. Furthermore, we considered descriptive observational study designs, including clinical case and descriptive cross-sectional studies. Studies and projects about quality improvement and professional-led interventions were included. Qualitative studies included, but were not limited to, traditions, such as phenomenology, grounded theory, ethnography, critical theory, feminist, descriptive and exploratory designs, case studies, and participatory action research. In addition, eligible systematic reviews were considered. Program descriptions, clinical reviews, text (e.g., textbooks), guidelines, practice briefs, and opinion papers were also included.

We included studies published in English. The period considered was from the year 2000 to the dates of the searches (August 2022 for bibliographic database searches and February 2023 for the final searches of new sources). We decided not to include articles published before 2000 because of the rapid evolution of DSME in the past two decades [46].

Search strategy

We identified published primary studies, text and opinion papers, and grey literature dedicated to the topic of DSME in older persons. We conducted searches electronically and manually; the latter was conducted by searching for relevant articles or papers in the reference lists of the selected articles. A three-step search strategy was used in this review. An initial limited search of MEDLINE was performed to identify articles about the topic, followed by an analysis of the text contained in the titles and abstracts of the retrieved papers and of the keywords used to describe the articles. The research team discussed and developed the most appropriate keywords and synonyms for search activities using feedback from an academic librarian. Keywords for the search included: diabetes mellitus, diabetes, diabetes type 1, diabetes type 2, diabetes education, diabetes training, diabetes knowledge, health education, health literacy, health promotion, diabetes training, older adults, elderly, geriatric, geriatrics, aging, senior, seniors, older people, aged 65 or 65+, self-management, self-care, self-regulation, and self-monitoring (see S2 Appendix). Boolean operators (OR, AND), including adjacencies and truncations, were used to combine appropriate keywords and related terms. This was followed by a second search across all included relevant databases using all keywords and index terms, and the third and final step of searching for additional studies by appraising and screening the reference list of identified reports and articles. The search was conducted in June 2020 and was updated in February 2023. The following databases and organizations for health care disciplines were searched: MEDLINE, PubMed, Google Scholar, ProQuest Dissertations and Theses, World Health Organization, PsycINFO, JBI EBP, Cochrane Databases of Systematics Reviews (all via OVID), CINAHL (EBSCO), and Pre-CINAHL (EBSCO). In addition, we searched conference proceedings of international conferences on diabetes, geriatrics, and gerontology associations and society meetings (see S2 Appendix).

Selection criteria

Study selection and data extraction.

Four independent reviewers extracted data from the included records using a data extraction tool developed by the research team [46]. The data extraction tool was not modified or revised during the extraction process. Data extraction was derived from our overarching research question and sub-questions [46]. Any disagreements between the reviewers were resolved through discussion. The following data were collected:

* Study characteristics (e.g., country, publication date, study design and purpose, sample size).

* Participant characteristics (e.g., mean age, diabetes duration, gender).

* DSME characteristics (e.g., type of program, number of sessions, setting, facilitator, theoretical/philosophical underpinning of the program, topics covered, program length).

* DSME outcomes measures, results and gaps identified by authors.

Data analysis and reporting.

We applied descriptive analysis of the extent, nature, and distribution of the studies included in the review and a narrative summary of the data collected. This was accomplished by summarizing the literature according to the characteristics of the studies, the characteristics of the DSME programs/interventions and outcomes, and the gaps identified by the researchers. We mapped the extent, range, and nature of the research about this topic using visual representations of the data. Data were charted, categorized, and summarized, and we explored similarities and differences within and between studies to identify the robustness of the included records. Herein, we reported quantitative (e.g., frequency) and qualitative results in a manner that aligned with the objective of this scoping review.

Results

Study inclusion

From the database searches we retrieved 5,254 records. After duplicates were removed, the remaining 2,397 records were screened by title and abstract, and 1,147 were excluded. The full texts of 1,250 articles were assessed for eligibility, and another 1,206 articles were excluded (reasons are documented in Fig 1). The most common reasons for paper exclusion were ineligible population (n = 639) and ineligible topic (n = 400). A final total of 44 records were included in this review. Fig 1 is a depiction of the stages of study identification and selection.

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Characteristics of included studies

Details of the 44 studies are summarized in Tables 1–3. All articles were published in the past 22 years (2001 to 2022). Most of the studies were conducted in the United States (n = 19), followed by Canada (n = 11), Australia (n = 3), the United Kingdom (n = 3), Germany (n = 3), and the Netherlands (n = 2). The remaining studies were conducted in Belgium (n = 1), Sweden (n = 1), and Norway (n = 1). Thirty-nine studies (91%) were about T2D in older persons, one study included older persons with T1D [52], and five studies did not specify the type of diabetes [11, 17, 20, 36, 53]. The total sample size for the 44 studies was 63,230 participants with a mean age of 69.06 years and a mean duration of diabetes of 9.85 years (excluding two studies without sample characteristics and six studies without information about the mean age of the study participants).

[Figure omitted. See PDF.]

[Figure omitted. See PDF.]

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Review findings

Research sub-question one.

How is DSME for older persons defined in the literature by study authors?

Definition of DSME in the literature by study authors.

DSME was defined by researchers as an essential component of patient-centred care [9, 10, 20, 24, 36, 54] and a collaborative process used to facilitate the required knowledge, self-care practices, coping skills, and attitudes to modify behaviour and successfully prevent or delay complications [9, 12, 17, 23, 26, 30, 37, 53, 55–57]. DSME supports people with diabetes and their families [55], and it has been successful in reducing HbA1C levels [56] and improving behavioural and clinical outcomes in older populations [12, 22, 26, 30, 37, 53–57]. The goal of DSME is to support informed decision-making, self-care behaviours, problem-solving, and active collaboration with the health care team to achieve optimal health status and a better quality of life (QoL) [9, 10]. To be effective, the development of DSME must take peoples’ life experiences into account, including the social determinants of health (SDH) and evidence-based standards of care [17, 20, 23, 24, 29, 36, 58].

Research sub-question two.

How is DSME defined by older persons?

Definition of DSME by older persons.

Of all 44 papers, one had a definition of DSME by older persons with diabetes. In the study by Robertson [20], participants’ understanding of diabetes education was shaped by their first engagement and interaction with other older persons with diabetes during their first sessions after diagnosis.

Review sub-question three.

What types of DSME programs have been reported in the literature for older persons with diabetes?

Types of DSME programs.

The education programs differed in their design, including strategies used, delivery mode, theoretical underpinnings, and duration. Tables 2, 3 are the detailed characteristics of all DSME programs and related study components. Thirty-two (76%) studies had the type of education, including empowerment models [9, 17], support and goal-setting programs [10, 26], culturally-tailored education [15, 34, 59], group-based programs [54, 60, 61], structured programs [16, 30–32, 37, 38, 52, 56, 57, 62–64], technology-driven education [12, 18, 33, 55], peer mentoring programs [27, 35], client-driven and community-based self-management (SM) programs [13, 14], coaching programs [25, 28], and individualized education [22, 29, 36].

A diverse group of theories and frameworks guided the development of the DSME interventions/programs: the health promotion model [15]; the Plan-Do-Study-Act cycle [10, 26], which includes a Plan phase wherein the objective for implementation is decided, a Do phase for identification and scheduling of patients, a Check [Study] phase wherein charts are reviewed, and workflow and no-show rates are assessed, and Act phase to start the planning cycle again based on identified barriers and interventions [10, 26]; empowerment philosophy [9, 17, 29–31, 55, 60]; trans-theoretical model [60]; social cognitive theory, which recognizes the central role of self-efficacy in achieving self-management behaviour (SMB) change [13, 14, 30, 31, 60]; behavioural change and motivational technique [60]; Bandura’s self-efficacy theory [28]; theory of meaningful learning [63]; the information processing model, which outlines the steps used to acquire and process information leading to a decision [63]; Leventhal’s common sense model of illness, which focuses on an individual’s illness representation or personal model of diabetes as a key determinant of an individual’s behavioural and emotional response to illness [31]; chronic care model, which creates practical, supportive, evidence-based interactions, shared medical appointments, and principles of DSME [26]; taking charge of one’s life with T2D model [61]; Carpeta Roja, developed by Latino Health Access in Santa Ana, California [35]; traditional principles of diabetes education [27, 52]; programs based on the American Diabetes Association (ADA) and National Diabetes Education Program [59]; translation framework and Iowa Model of Evidence-Based Practice [36]; and the American Association of Diabetes Educators (AADE) [12, 33, 34, 37, 55, 57].

In 34 studies, the topics of education were reported, including the basics of diabetes mellitus [29, 30, 31, 35, 59, 61, 62], dietary habits [9, 10, 12, 15, 16, 18, 22, 26, 27, 30–34, 36, 37, 56, 57, 60, 63], blood glucose monitoring [9, 10, 16, 25, 27, 29–33, 36, 38, 52, 56, 59, 62, 64], available treatments [9, 16, 25–27, 29–31, 33, 38, 59], physical activity [9, 12, 15, 18, 22, 27, 30, 31, 33, 34, 36, 37, 56, 57, 59, 60, 64], diabetes-associated complications [12, 15, 16, 22, 25, 26, 29–31, 33, 34, 36–38, 52, 56, 57, 59, 62], foot care [9, 27, 32, 56], health care use [10, 12], goal-setting behaviours [12, 15, 22, 25, 28, 30, 31, 34, 37, 57, 61], behaviour and healthy coping [26, 36], psychosocial support [10, 12, 15, 22, 34, 37, 57], identification of barriers to diabetes self-care behaviour [12, 15, 22, 57, 61], lifestyle modification [10, 29], problem-solving [12, 15, 22, 34, 36, 37, 57, 64], and client-driven and flexible education [13, 14, 17, 54, 64].

Researchers described various methods of engagement in DSME for older persons, specifically: culture circles, group discussion, quizzes, and experiential learning [9, 13, 14, 17, 32, 64]; in-person or virtual peer-to-peer mentoring sessions [29, 35]; exercise sessions and a light meal [13, 14]; a supermarket session (as part of several sessions) to facilitate the application of principles learned during the intervention [63]; developing a lesson plan and handouts, including tips on how to manage diabetes [56]; biweekly community health worker (CHW) visits to evaluate SDH and telemedicine to reinforce diabetes self-care activities for older persons living on a low income [36]; measuring blood glucose during the session [64]; video, handouts, oral presentations, and bilingual education [26, 34, 59]; and individual synchronous conversations [12].

Review sub-question four.

What types of research designs have been used to understand the development, implementation, and evaluation of DSME programs for older persons?

Research designs.

Of all 44 papers, 32 (70%) had a quantitative design, the majority of which were one-group pre-test and post-test studies (n = 13; 30%), followed by RCTs (n = 7; 16%) and static group comparisons (n = 4; 9%), while only three were qualitative (7%), two were quality improvement projects (5%), and three followed a mixed-methods design (7%). In four papers the research design was not reported or not applicable [17, 22, 23, 32].

Review sub-question five.

In what clinical (e.g., primary care, acute care) contexts have DSME programs been developed?

The context of DSME programs.

Most of the studies were developed in community settings (n = 12), followed by programs in primary care (n = 11) and hospitals (n = 10). One program was described as a successful transition from hospital-based to primary care [32]. Only four studies made education available to providers, including in-service education on DSME and the ADA Standards of Medical Care in Diabetes algorithm [10] and formal training for professionals [34] and paraprofessionals [25, 36]. In most studies, nurses (e.g., registered nurses [RN], nurse practitioners [NPs], and nurse educators) (43%) were facilitators of the programs, followed by diabetes educators (16%) and registered dietitians (16%). In four studies (9%) peers were involved in the programs/interventions [13, 14, 27, 35], and in two studies (5%) there was a self-directed approach to education [28, 55]. The lengths of the programs varied; however, most programs lasted 6 months (20%), 3 months (20%), or 2 months (7%). There was diversity in the number of sessions in the programs or interventions; most education occurred in one session (14%) or five sessions (14%).

Review sub-question six.

What outcome measures have been used to determine the effectiveness of DSME?

Outcomes of the DSME programs.

Study outcomes are summarized in Table 3. Of 44 articles, 34 included learning, behavioural, clinical, and other outcomes.

Learning outcomes. Two indicators of learning outcomes were assessed in 18 studies: diabetes knowledge and self-efficacy (i.e., belief of confidence in one’s self-management). In 13 studies, researchers measured the effect of DSME programs/interventions on diabetes knowledge. Of those studies, 11 had improvements in diabetes knowledge [9, 12, 15, 29, 31, 33, 35, 36, 38, 56, 64], one had no changes in knowledge [16], and in one it was concluded more education did not translate to greater diabetes knowledge [65]. Self-efficacy was measured in four studies: in two studies there were improvements in self-efficacy scores [25, 65]; in one study there were no reported differences in self-efficacy after the intervention [14]; and results were inconclusive in another study [13].

Behavioural outcomes. Behavioural outcomes were presented in 26 studies. These behavioural outcomes included self-management behaviour (SMB), mental health, and quality of life (QoL) indicators. In 21 studies, the SMB indicators included dietary habits, physical activity, health care use, blood glucose monitoring, medication adherence, skills in the administration of insulin, foot care, problem-solving, healthy coping, and reducing risks. Of these studies, 19 had improvements in SMBs [11, 12, 14–16, 29, 30, 34–38, 53, 56–59, 65, 66]. In one study, conclusions about the effects on SMB were based on observations and could not be confirmed based on assessment tools [60]. In one study, the results for behavioural outcomes were inconclusive [13].

Six studies had mental health indicators, including the assessment of mental distress, anxiety, and depression [13, 14, 25, 34, 59, 60]. In two studies the authors reported no difference in anxiety and depression scores for participants following the intervention [25, 59]. In three studies, the researchers described how the education program reduced symptoms of depression in the intervention group [14, 34, 60], and in one study, the results for mental health outcomes were inconclusive [13].

QoL was measured in seven studies [10, 13, 14, 16, 62, 64, 65]. Of these studies, five had a statistically significant increase in QoL scores [10, 14, 16, 62, 65], one had a trend of worsening mental health QoL [64], and in another, the QoL results were inconclusive [13].

Clinical outcomes. Clinical outcomes included fasting blood glucose (FBG), HbA1C, body mass index (BMI), cognitive function, blood pressure (BP), waist circumference (WC), waist-to-hip ratio (WHR), lipid profile, and renal profile.

HbA1C, the most common outcome, was measured in 16 studies, of which 11 reported a significant improvement following the intervention [12, 15, 26, 35–38, 56, 57, 59, 60, 63, 64]. For example, Choi and Rush [59] reported a decrease in HbA1C levels from baseline to the 3-month follow-up: 7.3 to 6.8% (t[39] = 5.13, p < 0.001). In one study HbA1C decreased from 7.4% (±1.3) at the 12-month follow-up to 6.8% (±0.8) (p = 0.040) at the 18-month follow-up [60]. In another study it was determined, to improve learning outcomes, HbA1C should be controlled in older persons with diabetes and impaired cognitive function before participation in DSME [16]. In two studies, there was no significant reduction in HbA1C following the intervention. Kellow et al. [34] found no significant changes in mean HbA1C between baseline and the 6-month follow-up (p = 0.32). Similarly, Knott and colleagues [32] determined transferring a DSME program from a hospital-based setting to three community settings did not affect HbA1C outcomes.

The other clinical outcomes included the following. Positive changes in FBG were described in two studies [10, 31]. Changes in weight or BMI were measured in four studies [32, 35, 60, 64]; in two of those studies, the authors reported statistically significant positive changes [35, 60], and in the other two studies researchers reported no differences in BMI [32, 64]. Cognitive function was measured in one study, wherein they demonstrated the effectiveness of DSME in older persons with diabetes and impaired cognitive function [16]. BP was measured in three studies [26, 35, 37]; in two of the studies they reported a significant decrease in BP [35, 37], and in the third they reported BP did not change during the intervention [26]. Lipid profiles were measured in eight studies [26, 32, 34, 35, 37, 59, 63, 64]; in three studies they reported significant improvements in lipid profiles [35, 37, 63], and in five they reported no statistically significant changes [26, 32, 34, 59, 64]. WC was measured in two studies and in both it decreased following the intervention [34, 59]. In one study they reported a significant reduction in waist-to-hip ratio (WHR) at program completion [34]. Renal profile was evaluated in three studies, wherein there were no significant changes following the intervention [32, 37, 64].

Other outcomes. Health care cost was mentioned as an outcome in three studies [13, 14, 26]. In one study the authors detailed the financial viability of the project in the billing and reimbursement process [26] and in another study they noted no changes in total health care costs during the intervention [14]; in the third study health care costs were inconclusive [13]. In three studies satisfaction was an outcome, and in all three the scores were high [9, 16, 36]. In Gorter et al.’s [24] study, education preference was assessed as an outcome; 80% of participants preferred diabetes education during regular check-ups, and participants taking insulin preferred receiving education from nurses (odds ratio [OR] 2.45; 95% confidence interval [CI] (1.21–4.96). Individuals who considered their health to be poor/average preferred to receive education from doctors (OR 1.65; 95% CI 1.08–2.53).

Review sub-question seven.

What are the gaps in the literature, including those identified by researchers, related to the development, implementation, and evaluation of diabetes self-management education for older persons living with diabetes?

We identified five gaps in the literature related to DSME for older persons in Western countries: the dearth of participation of older persons in DSME; limited or unclear minority representation; lack of qualitative research approaches; limited description of the sustainability of programs; and scarce description of available education for providers.

Gap 1. The dearth of participation of older persons in DSME.

How DSME is defined and implemented is critical to improving diabetes prevention and management, and this should be guided by the ultimate goal of diabetes education—to control one’s diabetes through the development of their skills and knowledge to facilitate daily living, improve clinical and behavioural outcomes, and prevent complications [9, 10, 20]. DSME definitions and implementation are mediated through disciplinary and theoretical lenses to assist practitioners in the design, development, implementation, and evaluation of DSME programs.

There were older persons’ definitions of diabetes education in one qualitative study [20]. To implement DSME, most studies were developed by multidisciplinary teams, including endocrinologists, NPs, RNs, CHWs, general practitioners, psychologists, physical activity counsellors, dietitians, psychiatrists, diabetes educators, physiotherapists, podiatrists, and nutritionists [15, 25, 34, 36, 52, 56, 60]. In one study, the modules for the intervention were developed by nursing faculty and students with support from a computer science and software engineering department [33]. For culturally diverse groups, bilingual professionals were included in the team [15, 34, 59], and in one study, the team included paramedics and emergency staff [52].

The inclusion of older persons, family caregivers, and community service providers in the development of the DSME program was limited [13, 14]; in two programs, peer mentoring was at the centre of the process of education [27, 35]. This work has been important, useful, and necessary; however, what remains strikingly lacking is understanding the insights of and developing DSME programs with the individuals most impacted by the phenomenon—older persons living with diabetes. Such experiential knowledge is vital in the development of educational programs to ensure alignment with the preferred learning styles, literacy levels, culture, and needs of this population—an approach that could manifest more substantive, sustained results.

Gap 2. Limited or unclear minority representation.

Race and ethnicity data were poorly described or lacking in most studies [10, 11, 13, 14, 16, 19, 24, 25, 27–29, 31–33, 38, 52, 53, 58, 60–62, 64, 66]. In seven studies, the population was described primarily as “white” [22, 35, 36, 54, 55, 58]; other terms used by researchers were “caucasian” [30, 56, 63, 65], “English ethnicity” [20], “Western ethnicity” [24], and “British” [9]. In the remaining five studies, the population was primarily described as “Black” [12, 37, 57] and “Mexican American” [15, 26]. There are well-defined inequities in which racialized and ethnic groups have reduced access to DSME [15, 19, 37].

Additionally, there is a need to include rural communities in the development of DSME programs. In this review, 10 studies included rural communities [9, 11, 13, 20, 33, 35, 36, 58, 65, 66]. Luo et al. [58] described how participation in diabetes education in rural settings was 7% lower than in urban areas. Robertson et al. [20] found rural living was described by participants as a barrier to successful diabetes management and education; the distance to access physical activity programs, groceries, diabetes education, and medical care was noted as a major concern. Furthermore, participants talked about fewer opportunities for DSME programs [20]. Rural communities are characterized by lower rates of personal income, educational attainments, health care access, access to healthy and affordable food access, and more environmental barriers—these factors must be considered when developing diabetes education for older persons in these communities [20, 65]. The development of DSME programs must involve evidence-based practices and address the unique barriers resulting from living in rural communities [20, 36]. A strategy to improve access to DSME, as suggested by Marsh et al. [36], includes the use of CHWs enrolled as peer coaches for patients with diabetes in rural settings. In their study, during the home visit, the CHWs performed routine SDH assessments and provided basic diabetes education. In addition, they facilitated telehealth consultations for patients with health care providers (HCPs). This intervention successfully bridged the effects of limitations in regard to the SDH for older persons with diabetes in rural settings, including the lack of internet, health literacy, and or reliable transportation that restricts their participation in DSME [36].

Socioeconomic status—a SDH—was reported in 13 studies [11, 13, 15, 18–20, 28, 35, 53, 54, 58, 59, 65]. Older persons with diabetes living on a low income are often underrepresented in the development of DSME strategies [18]. Kemper et al. [19] found that older persons without a high school diploma received less formal diabetes education than those with a high school diploma. To improve learning, clinical, and behavioural outcomes in diabetes, DSME programs must attend to the effects of the SDH on diabetes self-care practices for older persons [17]. Future work should clearly describe the race, ethnicity, income, type of diabetes and education level of research participants. In addition, efforts should be made to include other older persons with diabetes in circumstances of vulnerability, such as older persons with disabilities, older persons living on a low income, immigrants, refugees, and members of LGTBQ2S+ communities to participate in future DSME research and the design, development, implementation, and evaluation of programs.

Gap 3. Lack of qualitative research approaches.

The use of qualitative approaches to study DSME for older persons is limited. Of the 44 studies, only six used qualitative research designs [20, 54, 61] or methods [35, 52, 55]. Qualitative research is essential for the development of well-rounded, meaningful, client-oriented DSME programs, as it enables a deeper understanding of experiences, phenomena, and context. Researchers have identified the high risk of complications in older persons, who often fail to obtain or retain self-management competencies [46]. For example, in the studies by Liu et al. [52] and Robertson et al. [20], older persons felt diabetes education was helpful during diagnosis but was less effective, highly controlling, and repetitive at later stages. In both studies, participants shared they did not need diabetes education [20, 52]. This is a finding that cannot be ignored and must be addressed through further investigation as to its meaning (such as whether there is full awareness of all the illness implications [regardless of lack/presence of symptoms], whether there is preference to seek information only when problems arise, and or whether content, structure of education or both have influence on this perspective), and to the development of strategies that guarantee continuous DSME for older persons to avoid complications. Through qualitative data, older persons can share their suggestions about strategies for organizing DSME programs in their communities. The value of group sessions was described in almost all studies [20, 35, 52, 54, 61], and the addition of peer mentoring programs as a strategy for engagement was noted in two studies [20, 35]. Novel programs and interventions can be built from the analyses of qualitative data, which is rich with nuanced information that is not easily expressed as numbers; this includes feelings and preferences about individual learning and gaining knowledge, and idiosyncratic experiences of self-managing diabetes [46]. To ensure comprehensiveness, the voices of older persons—as obtained qualitatively—should not be overlooked in the design, implementation, or evaluation of DSME programs.

Gap 4. Limited description of the sustainability of programs.

The reported length of the DSME programs was 6 weeks [18, 25], 2 months [26–28], 10 weeks [63], 3 months [10, 12, 15, 30, 36, 59, 60], 5 months [56], 6 months [13, 14, 16, 34, 37, 38, 62], 12 months [57, 64], 18 months [52], and in one program, the duration was determined by patient needs and ranged from 4 months to 2 years [35]. In the reviewed programs/interventions, there was no measure of outcomes maintenance after participation ended. One program was described as ongoing, as the program moved from hospital-based to primary care [32]. Markle Reid et al. [14] recommended considering the sustainability of DSME interventions, instead of only the short-term effects of interventions, which is most often studied.

The sustainability of interventions requires their persistent implementation across settings and delivery sectors, and including attention to health behaviours and outcomes [67]. Maintaining effective programs and practices, especially for older persons with diabetes, is critical for achieving health benefits and policy changes. A lack of a sustainable plan for any intervention jeopardizes future community support, engagement, and trust in researchers [68]. Research is needed to evaluate the effectiveness of these interventions on long-term diabetes-related outcomes. It would be prudent for future DSME programs/interventions to integrate sustainability as a core element for evaluation and research, including the continuation of the DSME components, capacity building, and continued health benefits or outcomes for older persons with diabetes.

Gap 5. Scarce description of available education for providers.

In only four studies, education was made available to providers in the form of in-service education [4] and formal training for professionals [34] and paraprofessional educators [25, 36]. For example, in Andrich and Foronda’s [4] study, providers received education on DSME and the ADA Standards of Medical Care in Diabetes algorithm to facilitate the project and continue the implementation of DSME after the initial data collection period. The education included evidence-based recommendations, project goals, project plans, written material (i.e., algorithm of care and brochures), and cost analysis with reimbursement opportunities. Based on the review of 40 patient charts, DSME was implemented at a rate of 20% prior to the intervention. Compliance with using DSME information only increased to 35% after the DSME practice change initiative. Although statistically significant (p < 0.05), the results did not meet the objective of the study to increase provider use to 50%. Kellow et al. [34] trained all clinicians in culturally appropriate education approaches that were effective for Chinese patients, including re-orienting their professional positioning in the Chinese-specific therapeutic relationship. In another study, CHWs received 2 months of diabetes education based on the Association of Diabetes Care & Education Specialists’ (ADCES7) Self-Care Behaviors curriculum. CHWs were trained in monitoring vital signs, checking HbA1C and glucose levels at home, documentation, and using the telemedicine videoconferencing platform [36]. In Pauley et al.’s [25] study, personal support workers (PSWs) were trained in diabetes management, including health behaviour change, adherence to treatment, avoidance, reduction of unhealthy behaviours, and adoption of healthy behaviours.

The need for quality diabetes education is well known [10, 25, 36]. HCPs’ misconceptions about diabetes management may have a negative effect on the quality of services provided to older persons with diabetes [10, 34]. In six studies, authors recommended researching the process of education itself [23, 60], the type of education received by HCPs [23, 33], HCPs’ knowledge [10], evaluating the current contents and effectiveness of different delivery modes of DSME [23, 58], and evaluating locally-developed programs and comparing their content to programs developed for studies and guidelines [64].

Discussion

DSME is a vital component of diabetes care to prevent or delay complications [9, 10, 20, 22, 36, 54]; however, its implementation or the range of programs/interventions in persons aged 65 years and older has not been well documented [46]. This scoping review was conducted to address this gap in knowledge and to map the available evidence about DSME for persons aged 65 years and older living with diabetes in Western countries so that the circumstances and unique needs of this group do not go unnoticed or minimized. This is the first scoping review to focus on describing the aims, type of program, theoretical/philosophical underpinnings, topics covered, program length, outcomes and evidence gaps for persons 65 years and older in Western countries.

DSME, recognized as a crucial element of person-centred care, has been studied by researchers [9, 10, 20, 24, 36, 54]. It aims to empower persons who live with diabetes by equipping them with knowledge, self-care practices, coping skills and shaping attitudes to modify their behaviour and effectively prevent or delay complications [9, 12, 17, 23, 26, 30, 37, 53, 56, 57]. To ensure effectiveness and applicability to older adults, DSME must account for individuals’ lived experiences—including the influence of the SDH—while adhering to evidence-based standards of care [17, 20, 23, 24, 29, 36, 37]. By incorporating these factors into the development of DSME programs, health care providers can align education and support with the unique circumstance of older persons, thereby enhancing the overall effectiveness of the intervention or program.

The scoping review revealed a diverse range of DSME programs or interventions encompassing various designs [9, 10, 12, 15–18, 26, 30–34, 37, 38, 52, 54–57, 59–64], theoretical foundations [9, 10, 12–15, 26, 28, 30, 33, 37, 52, 60, 63], and education topics [9, 10, 12, 15, 16, 18, 22, 26, 27, 30–34, 36, 37, 56, 57, 60, 63]. These findings highlight the importance of tailoring interventions or programs to address the specific needs of older persons with diabetes yet seems to suggest an (adaptable) gold standard remains elusive. Technological and non-technological education demonstrated promise for older persons with diabetes. Technologically-driven education included the use of iPads^® [33], Fitbit^® devices [18], telehealth [36], synchronous sessions [12], and the use of online doctors’ notes [55]. Despite the popularity of these technologies, consideration must be given to older persons of low socioeconomic status who do not have access to smartphones and who may have lower technology literacy or those who live in rural areas where connectivity to the network is often challenging. Ideal interventions must be inclusive and reach populations living in vulnerable conditions. For example, in Marsh et al.’s [36] study, participants accessed telehealth via CHWs visiting their homes, a strategy that guaranteed regular consultation with HCPs and improved clinical, behavioural, and learning outcomes in older persons with lower SDH [36].

Another relevant finding from this review was education is organized as individual, group-based, individual and group-based, and peer-oriented programs. Individual education was provided in eight studies [12, 22, 25, 28, 29, 33, 36, 57], peer-mentoring sessions in two studies [27, 35], and group-based programs in 20 studies [9, 10, 15–18, 30–32, 34, 37, 38, 54, 56, 59, 61–64], and individual and group sessions in two studies [13, 14]. In one study, researchers indicated education was initially planned for small group sessions; however, due to low attendance, case-by-case education was instead provided [52]. DSME should be based on the diversity, culture, health literacy levels, levels of independence, comorbidities, and unique needs of the older population. By considering factors, such as delivery mode, cultural relevance, and personalized support, these programs can effectively aid older persons to actively engage in self-management behaviours, leading to improved overall well-being, diabetes management and QoL.

Researchers found DSME programs/interventions to be an effective means of improving clinical outcomes (e.g., HbA1C, blood glucose, lipid and renal profile, and BMI), SMBs (e.g., dietary habits, physical activity, and coping strategies), and learning outcomes (e.g., diabetes knowledge, and self-efficacy) in Western countries. Moreover, the general success of these interventions does not appear to be restricted to specific geographical factors, such as languages, cultures, or how health care systems are organized.

Specific to clinical outcomes, many reviewed studies showed significant improvements, particularly HbA1C, in older persons with diabetes who participated in DSME programs [12, 15, 26, 35–38, 56, 57, 59, 60, 63, 64]; notably however, a few studies did not find significant reductions in HbA1C [32, 34]. Other clinical outcomes, such as fasting blood glucose, weight/BMI, cognitive function, blood pressure, lipid profile, waist circumference, waist-to-hip ratio, and renal profile, also improved in some studies [10, 31, 32, 35, 60, 64]. These findings highlighted the potential of DSME programs to enhance overall health and well-being in older individuals with diabetes. Understanding the impact of DSME programs on clinical outcomes and individual preferences contributes to ongoing efforts to optimize diabetes care. Future research should explore the long-term effects and cost-effectiveness of DSME programs, as well as address the preferences and needs of individuals in different health care settings.

The studies also emphasized the positive influence of DSME programs on diabetes knowledge and self-efficacy, enhancing older individuals’ understanding of the disease. However, it is important to acknowledge providing education does not guarantee increased knowledge. Self-efficacy outcomes varied, with some studies showing improvements [25, 65] and others showing no significant change [14]. To effectively empower individuals in managing their condition, DSME programs should address both knowledge and self-efficacy. By combining educational interventions with strategies to enhance self-efficacy, DSME programs can promote greater confidence and self-management skills among individuals with diabetes.

DSME programs yielded positive effects on behavioural outcomes, fostering improvements in self-management behaviours like dietary habits, physical activity, health care utilization, blood glucose monitoring, medication adherence, and problem-solving skills [11, 12, 14–16, 29, 30, 34–38, 53, 56–59, 65, 66]. These programs enabled individuals, promoting favorable lifestyle changes and equipping them with the necessary tools for effective diabetes management. Moreover, DSME programs enhanced the QoL for older persons with diabetes [10, 14, 16, 62, 65], except for one study which had a trend of declining mental health-related QoL [64]; this underscores the need for tailored interventions to address these concerns. Overall, these findings accentuated the significance of integrating behavioural interventions into diabetes care to bolster clinical outcomes, foster self-management behaviours, improve mental health, and enhance the QoL for older individuals with diabetes. The incorporation of sustainable strategies, continuous research, and customization to individual needs remain imperative for optimizing the effectiveness of DSME programs.

Another key finding of this review was the lack of measurement of outcomes beyond the program duration. Ensuring the sustainability of interventions is crucial for achieving long-term health benefits and driving policy changes, especially for older persons with diabetes. Hence, it is vital to assess the longevity (as designed) of effective programs across diverse settings and delivery sectors, while also addressing health behaviours and outcomes. Failing to establish a sustainable plan for interventions can undermine future community support, engagement, and trust in researchers. Therefore, future DSME programs should prioritize sustainability as a core element, integrating it into evaluation and research. This encompasses the continuity of DSME components, capacity building, and the assessment of long-term health benefits and outcomes for older persons with diabetes. Determining the effectiveness of interventions on long-term diabetes-related outcomes is essential to ensure the appropriateness and enduring impact of DSME programs.

The limited inclusion of educational interventions for HCPs within the reviewed studies exposed the need for improvement in this area. Enhancing provider education is crucial to address misconceptions and knowledge gaps, equipping them with the necessary tools to effectively aid older individuals with diabetes. By prioritizing comprehensive education for HCPs, health care systems can improve the quality of care and outcomes for this population. Further research is necessary to explore different approaches to provider education, to evaluate the effectiveness of DSME delivery modes, and to assess locally-developed programs. Emphasizing provider education can translate to better delivery of DSME, ultimately improving management and well-being for older persons with diabetes.

The limited use of qualitative research designs in studying DSME for older individuals suggests a need for a deeper understanding of their experiences and needs. Qualitative research is critical in developing person-centered DSME programs that address the unique challenges faced by older individuals with diabetes. Findings from qualitative studies indicated, while older persons may find diabetes education beneficial during diagnosis [20, 52], they perceive it as less effective and repetitive in later stages, and some expressed a reduced need for its continuance. Gaining greater insight into why some feel diabetes education (including ongoing instructional support) may not be applicable or needed, coupled with strategies to ensure continuous relevant DSME for older persons, are crucial to maximize and sustain self-management capabilities and prevent complications and disease progression. The incorporation of qualitative data enables researchers to gain valuable insights into the preferences and experiences of older individuals, facilitating the development of tailored interventions that align with their learning styles, literacy levels, culture, and individual circumstances. By integrating the perspectives of older individuals in the design, implementation, and evaluation of DSME programs, more meaningful and relevant interventions can be created, ultimately leading to improved self-management behaviours and outcomes for this population.

Finally, given that only in one study [20] authors described participants’ understanding of DSME, future research should prioritize investigating how older persons define and understand DSME, with appreciation that one can have difficulty fully detailing something to which they are not aware. Importantly, it is about how older persons may have different perspectives and priorities when it comes to managing their diabetes and understanding their unique experiences and perspectives can inform the development of more effective interventions. Exploring the ways in which older persons define and understand DSME can also highlight potential gaps or misconceptions that may need to be addressed in educational programs. As such, by including older persons’ voices, research can contribute to improving the quality and accessibility of DSME interventions and better support older persons in managing their diabetes and improving health outcomes and quality of life.

Study strengths and limitations

This study has several strengths, including the following. First, to our knowledge, it is the only scoping review that has explored this topic in this context. As such, by describing DSME aims, type of programs, theoretical/philosophical underpinnings, topics covered, program lengths, and outcomes, we have mapped existing evidence in regard to persons 65 years and older living with diabetes in Western countries. This important new contribution aids educators, practitioners, and researchers alike in more effectively accessing the evidence. Further, it has made visible where knowledge gaps exist for this population, providing cautionary note regarding current information, as well as research direction going forward. Second, it has been conducted in a rigorous manner, using a recognized, credible methodological approach. Third, the information has been presented such that there is complete transparency and substantive detail about the process and resulting findings, which also contributes to rigor, replicability, and evidence access.

The limitations of this review are also important to acknowledge. Due to time and resource constraints, we included only articles published in English journals from 2000 to 2022, thereby excluding useful information that may be available in other languages. It is plausible some studies were missed based on the search terms and databases. A general limitation of scoping reviews is the inclusion of articles irrespective of their quality [69]; notably, while the quality of our included studies was not evaluated, this approach was the most appropriate given our initial goal of mapping the literature to determine the current status of research about DSME and older adults before proceeding. Overall, despite these limitations, we believe the review provides an important overview of this evidence, which is an essential phase in advancing practice, policy, and future research. We consider this information of value as it can raise awareness and inform the development and implementation of DSME for older adults in Western countries.

Conclusion

This scoping review aimed to answer the following question: what has been reported in the literature about DSME for persons aged 65 years and older living with T1D and T2D? It is clear diverse educational approaches have been used over time to engage older persons in DSME. A consistent concern about most of the studies was the lack of representation and engagement of older persons in the definition, development, implementation, and evaluation of DSME. To be inclusive—and as such, to be ‘right’—diabetes education must account for the uniqueness of each person and their circumstance, culture, preferences, experiences, and knowledge; as well, it must accommodate different degrees of independence and comorbidity. With attention to these factors, more substantive and sustained results will be achievable.

Supporting information

S1 Appendix. PRISMA-ScR checklist.

https://doi.org/10.1371/journal.pone.0288797.s001

(DOCX)

S2 Appendix. Sample search strategy.

https://doi.org/10.1371/journal.pone.0288797.s002

(DOCX)

Acknowledgments

We would like to express our sincere gratitude to the following individuals for their valuable contributions and support throughout the development of this work. We would like to thank Ms. Amanda Ross-White, Health Sciences Librarian, for her ongoing support, extensive knowledge, guidance, and assistance in accessing relevant resources; her contribution was instrumental in conducting comprehensive research and ensuring the accuracy of the information presented in this project. We are also deeply indebted to Dr. Christina Godfrey, Associate Professor, for her invaluable guidance regarding the scoping review. Her expertise, insightful suggestions, and unwavering support greatly enhanced the quality of this work. We are truly grateful for her mentorship and dedication in helping us navigate the complexities of this particular type of review. Additionally, we would like to extend our heartfelt appreciation to Dr. Deborah Tregunno, Associate Professor (retired) for her significant help in the initial phases of this study. Her encouragement, feedback, and belief in it was pivotal to its inception and progress. Her suggestions and thoughtful discussions were immensely valuable, and we are truly grateful for her contributions. We would also like to acknowledge the unwavering support and assistance provided by the students involved in the development of this work. Mses. Samantha Lefebvre, Stephanie Margret Saunders and Chloe Coulson, your dedication, hard work, and commitment to this project have been truly commendable, and have undoubtedly enriched the final outcome.

Citation: Camargo-Plazas P, Robertson M, Alvarado B, Paré GC, Costa IG, Duhn L (2023) Diabetes self-management education (DSME) for older persons in Western countries: A scoping review. PLoS ONE 18(8): e0288797. https://doi.org/10.1371/journal.pone.0288797

About the Authors:

Pilar Camargo-Plazas

Roles: Conceptualization, Formal analysis, Funding acquisition, Investigation, Methodology, Supervision, Writing – original draft, Writing – review & editing

E-mail: [email protected]

¶‡ PCP and LD are joint senior authors on this work.

Affiliation: School of Nursing, Queen’s University, Kingston, ON, Canada

ORICD: https://orcid.org/0000-0002-8349-7723

Madison Robertson

Roles: Formal analysis, Methodology, Writing – review & editing

Affiliation: School of Nursing, Queen’s University, Kingston, ON, Canada

ORICD: https://orcid.org/0000-0001-5984-8098

Beatriz Alvarado

Roles: Formal analysis, Funding acquisition, Writing – review & editing

Affiliation: Department of Public Health Sciences, School of Medicine, Queen’s University, Kingston, ON, Canada

Geneviève C. Paré

Roles: Formal analysis, Methodology, Project administration, Writing – review & editing

Affiliation: School of Nursing, Queen’s University, Kingston, ON, Canada

ORICD: https://orcid.org/0000-0002-3714-9744

Idevania G. Costa

Roles: Funding acquisition, Investigation, Methodology, Writing – review & editing

Affiliation: School of Nursing, Lakehead University, Thunder Bay, ON, Canada

Lenora Duhn

Roles: Funding acquisition, Investigation, Methodology, Supervision, Writing – review & editing

¶‡ PCP and LD are joint senior authors on this work.

Affiliation: School of Nursing, Queen’s University, Kingston, ON, Canada

ORICD: https://orcid.org/0000-0002-0401-953X

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